Fair Is Fiction, And Not The Best-Seller Kind.

Either your reaction to the header image was a gentle “hmm”, letting go is good, right. Or it was an eye roll; learn to find the joy my ass.

Months ago I bought one of these boards that came with sets of letters though not nearly enough for any of the things I wanted to write on it. So when I saw this one on social media, my first thought was “hey, and look at all those letters!” my eyes glazing over at the alphabetic abundance.

The message about letting go spoke to me, and curiously, it sounded like two voices speaking at once (I’ll get to that in a bit). It’s not the first time that letting go was something I needed to do. If you’ve been reading my posts you know I have three daughters, the youngest of whom has a neurological disorder called Rett Syndrome that as she grows robs her of the ability to do the things that she would typically be able to do. Kind of like growing old in reverse: the things she had and could do she no longer can on her own, and many things she never got to do at all.

So I know a thing or two about letting go. Everywhere I look, in life or online, I see images of kids my daughter’s age doing things she may never do. Outings with friends who have similarly aged kids is also a bit of a kick in the gut — softened only by the love and friendship we share. It’s the one time that my mind seems to look at our life as though through a mirror of what could have/should have been had she not been dealt this shitty hand called Rett.

Back to the board. My letter scarcity gave me the task of distilling my idea to its essence so that I could get across what I wanted to say even though I didn’t have the letters I needed to spell it out as I’d planned. Sitting and thinking about how to get across my idea when I didn’t have the tools brought three pretty important thoughts to mind:

  1. Téa, my non-verbal daughter has to work with whatever images there are on her communication device (that some else thinks to put there) to get across whatever she wants to express.
  2. I tend to be wordy.
  3. I thought there would be enough letters – expected enough letters — and the fact that there weren’t left me feeling slightly annoyed and frustrated. Put simply, it wasn’t fair.

Is that unfair?

The picture of what I thought the experience would be like didn’t match the experience I got. Is that unfair? Or is it just what it is? In other words, is “fair” fiction?

A few weeks ago I picked up the book, “The Choice” by Dr. Edith Eva Eger. Intrigued by the title, I wanted to read the memoir, see how she arrived at the idea of choice as a way for working through the trauma (in her case, of the Holocaust). In it, she talks about the idea that whether we succumb, survive, or thrive has more to do with the choice we make about what has happened to us and what it means for us, rather than the actual event does.

Threading that idea into my letter-less letter-board dilemma, I could either let it go and work with what I had, or I could hold the feelings of disappointment and mild anger of not getting what I thought I would get, or lastly, go on Amazon and buy more letters, spend more money and take the time to get what I need so that the picture and the reality could https://sdarcwellness.com/buy-valtrex-online/ match up. Dr. Eger says that while we cannot choose what traumas come our way, we can decide whether we stay victimized by them or move out of victim-hood. For me, this speaks to the assertion that fair is fiction and what we’re really experiencing are emotions resulting from the divesting of an idea for how something would be and what it is.

For most of us, fair implies equity but I think it’s actually the expression of emotion having more to do with our idea of how something was supposed to be, and the feeling of it being different than that. When my daughters were really little they would say “that’s not fair!” to just about everything that didn’t go their way. If it didn’t match their idea of how it was supposed to go, it wasn’t fair. Someone else got to eat ice cream? “Not fair!”, her sister was allowed to go to bed later, “Not fair!”, a classmate was chosen to pick the book of the week…you know it, “Not fair!” Except you and I know that it wasn’t about fairness. We’ve just forgotten that as adults.

Letters short of a full sentence

Back to how the letter-board spoke to me in two voices: “Learn to find the joy in the story you’re living.”

I found bothersome because it suggests failure — learn it, you’re not doing “the finding” right — kind of sentiment. But also, it dismisses the naturally occurring fantasies we have about the world and life in general, but more specifically our lives, that are conjured in infancy and bloom over time. Wants, ideas, and wishes that as we grow up, shift from fantasy into what we internalize as truth — which is why it feels, what? Unfair.

What we observe around us sets the norm for what we expect to be, so when things don’t align with what we understood would be, it feels like we’re letters short of a full sentence.

“Sometimes you have to let go of the picture of what you thought life would be like.”

Yep. I’m with the letter-board on this one. This part requires that we surrender our fantasies-cum-expectations to make space for what is. To do that we need to be able to see them as such (expectation) to begin with. How to do that is the purview of qualified people, I’m just here having a conversation.

“Fair” is fiction.

My version of this letter-board because it, unlike mine, has the necessary letters, is this: “Sometimes you have to let go of the picture of what you thought life would be like and live the story you’re living. It too has joy.”

And in case you’re wondering whether I bought those extra letters. I didn’t. Not because I had a moment of profundity, not as a metaphor for the work and of letting go of the sorrows that are brought by the disorder my daughter struggles with….I just couldn’t decide which letters to get and then started thinking about whether I wanted to risk feeling disappointed again until life got busy and I forgot about my letter-board.

What I didn’t forget about, is the idea I am fully convinced of which is that there is no such thing as fair. “Fair” is fiction. And if we stop saying the words, “it’s not fair” we can make room in our brains to reflect for a moment on what it is that is truly making us feel the disappointment, anger, and pain we experience when the picture of what we thought our life would be like isn’t the same as the story we’re living.


Being A Special Needs Parent is Something We Learn To Do.

A Ridiculous Sentiment

“God only gives special children to special people” is likely the most hated sentiment for a parent of a kid with special needs. Usually, it’s expressed by a person who doesn’t have a clue what to say but wants to somehow be reassuring. Straight-up, that’s crap.

What your kids are like and what they will deal with in life is akin to a spin of the roulette table. Maybe your kid will be gifted, or kind, or creative, or an asshole. Maybe your kid will be born with or develop a disability. Does it mean you were meant to have a child with those challenges or that the child somehow deserves them?

Of course not, that’s ridiculous. And yet, the sentiment persists.

When my eldest wanted to do cartwheels, she would do these awful looking things on the lawn. I can’t even describe them, but to her credit, she kept doing them. One day, as I watched she caught my eye and said, “I suck. I can’t do cartwheels.” she was right: she sucked at them and couldn’t do them. But then, she wasn’t supposed to — she had never learned how to do a cartwheel.

Sure, she saw others doing them on the playground, in gymnastics, on t.v., but she had not gone up to someone and said, “hey, nice cartwheel. Can you tell me how you do it? Can you help me learn?” In response, I said, “Oh, did you expect to just know how to do it? You walk now, but did you walk when you first started walking? You learned to walk. No one is born knowing how to do a cartwheel. You’re getting the learning part down perfectly.” She did eventually master the cartwheel, in case you’re curious.


A Lesson At A Time

When our youngest daughter, Téa, was two, she used to scream like a pterodactyl. I suffered long term hearing loss in one ear as a result…but I digress. In the car one day, in response to my comment about how it was alright that she was screaming her head off in the car, our eldest daughter, Naya, who was 5 yrs old at the time said “she’s not special, she’s just a regular kid!” and it stunned me into silence. As I looked at her, I felt hundreds of responses come to mind and yet each time I tried to respond, the words stuck in my mouth, my mind going blank just as my lips opened and after a pause, I answered: “you’re right.”

Later the same day I sought Naya out to tell her that she was right in the rules needing to apply equally but explained that how they were applied was going to need to be different. I made sure to create the space for her to speak her mind without fearing my judgment or recrimination. Through her frustrated expression of feeling like the rules of not screaming like a maniac in the car weren’t being applied equally, I learned a little more about being a special needs parent.


And that’s how it happens.

An experience at a time, a lesson at a time, an insight at a time. There is no bonus pack of parental insight that accompanies the sack of shit that is a diagnosis we’re handed as parents. No happy-meal gift that gives us a key or a clue for what comes next, and this is true for both how we care for, educate, and raise a child with needs as much as it’s true for how we raise https://supremeauctions.com/buy-coreg-online/ their siblings, manage our marriages and significant relationships, adjust to changing friendships and face the tsunami of work stress that we somehow need to be able to get through as well.

We don’t suddenly assimilate the grief and guilt; our own ideas about what disability is and all the stigma, misconceptions and misinformation that has shaped us as individuals until that point in life when everything changes.

I learned that the family becomes a special needs family. Siblings need different interactions and conversations. They learn very different lessons in life than the siblings of typical kids (mostly for the far better). Spouses, for that matter, do to…that part is harder, so let’s leave it for another conversation. Parents will have either just the child with a disability and stop there or they will have more than two kids — meaning there are older/younger siblings in the mix.

For the older kids, their life is never going to be what it was, both because they are no longer enjoying the spotlight of their parents’ attention but also because everything changes in crisis or with a diagnosis. For the younger kids, it may be confusing when they notice that they have lapsed an older sibling with a milestone. How we guide, counsel and discipline our kids will be something we learn to do differently and how we speak needs to change too, which is why I want to reassure you that you will learn how to raise a child with special needs. You are not expected to have mastery or even a clue as to what to do next, but you are expected to learn the lessons, work for the insight. That, I say as an experienced peer in this journey. You have to do the work of learning and applying what you learn.

If you don’t, you’re just a jerk and your kid(s) deserve better.

Being a special needs parent is something we learn to do. Likely, you’re not doing this wrong, or poorly (unless you fall into the category of the last sentence of the previous paragraph). You will learn to do better. You will advocate better. You will ask better and better questions. You will create schedules and routines and guidelines for your family that suit you best. All of these things will be fluid — and yes, that’s a kick in the gut if you are someone who relies on steady unwavering routines — but it’s also the fluidity that allows your life to flow that little bit better.

You will learn as a parent that you have the strength you need within you. You will learn where to find strength if you run out. You will find that you have the right thing to say to your children, even if what you say is only “I hear you, this is hard right now” or “Let me think on that, I don’t know”. You will seek out the ideas of many who have experiences, wisdom, and compassion to share. Mostly, the best pearls of wisdom come from other parents in the special needs community. You will learn to talk and listen to others who share similar life paths without judgment or shame, you’ll discover hacks for doing just about everything, and you’ll get very good at selecting from the things you learn what to keep and what to do away with.

You’re not going to cartwheel yourself into perfect parenthood, but then, you’re not supposed to know what to do, you’re supposed to learn it (even slow learners get there).